Rest in Paradise, Luke

 

The past few days have been so overwhelming for our family. Luke has spent the most beautiful 219 days here on earth. He grew his wings and flew straight to heaven on Wednesday, September 26, 2012 at 11:05am

 

Services for

LUKE GERARD BALDOMERO

Saturday, October 6, 2012

4pm-9pm

Public Viewing at Duggan’s Mortuary

500 Westlake Ave Daly City, CA 94014

Sunday, October 7, 2012

4pm-9pm

Public Viewing and Vigil Service at Duggan’s Mortuary

500 Westlake Ave Daly City, CA 94014

Monday, October 8, 2012

Funeral Mass

11am

Our Lady of Perpetual Help Catholic Church

60 Wellington Avenue, Daly City, CA 94014

Interment

Holy Cross Cemetery

1500 Mission Road  Colma, CA 94014

Please wear white.

 

 

Memorial Mass and Celebration of the Life of Luke Gerard Baldomero

199 Brandon Road, Pleasant Hill, CA 94523

Date and Time to be announced

 

 

  • Flowers to be delivered to Duggan’s Mortuary before 11am on Saturday, 10/6/12

WE’RE FINALLY HOME!!!!

LUKE BALDOMERO 24 WEEK PREEMIEThat’s right!!! After a 209 day journey in the NICU, Luke is now finally home!!!

When I started this blog, I had plans on writing a long post about Luke’s homecoming. We weren’t able to update the blog as often as we wished with the preparation of him coming home – but I’d like to share [what I remember now!]

 

Looking back, the thought of him coming home was so surreal. We always wanted him home with us – and to be honest, we were scared and never felt ‘ready’. We had a talk with one of Luke’s doctors and were shocked to learn that Luke would be ready in about 3 weeks!! Luke was then a few weeks post-op so after all the drama we’ve been through – it was shocking to hear that our little boy’s coming home! There were TONS of things we all needed to coordinate before his discharge and eventually I’d be sharing a lot of what I learned in the process. From that point on, it felt like we were on the phone/meetings/classes non stop while Luke continued to strengthen.

We had to complete classes like infant CPR, how to use all his equipment and how to take care of his GTube. We also had to make sure we had all the supplies needed to take care of Luke. We also had to prepare home – which we haven’t prepared for Luke ready. We were very superstitious about setting everything up!

As Dday came, Luke spiked temperatures TWICE. It almost felt like a tease  . . but it felt good to say goodbye to everyone we possibly can. Lol!! All the NICU staff [Nurses, Doctors, Admin Staff, Social Workers, Security Guards] all felt like family during our almost 7 month stay. Saying goodbye was so bittersweet because we couldn’t have a better group of family to stay by our side thru all the ups and downs. After Luke spiked a temperature the second time, we decided not to tell ANYONE outside of the NICU we were going home. We didn’t want to jinx his homecoming. . and 3rd time was a charm! It was so nice to call/text/email/instagram/facebook/facetime everyone that Luke was finally home!!

 

So far, things have been good [knock on wood]. We really miss all his Aunties and it feels like the safety cushion isn’t there – but we’ve had 7 months of training on how to take care of Luke. We don’t have the same monitors that kept up paranoid – but we’re managing. Luke’s Luke. He has his good times and he has his real fussy times. We’re tired as we expected and are really thankful that Neill’s parents took a week off to help us adjust. We’re starting to learn what he likes here at home and what he doesn’t – he absolutely LOVES watching football/baseball with daddy. I think it’s because he likes seeing all the pretty colors haha!

Taking him outside was a little bit of a challenge. So far, we went to 2 different doctor visits and the second time went a bit smoother than the first. Hopefully we’ll find our groove soon – there’s so much to lug around!! I almost died the first time!!

When Luke was discharged, he weighed 9lbs 2oz. . and yesterday he weighed 9lbs 14oz!! He managed to gain 12oz in less than a week!!

 

We’re always so thankful to hold our little miracle in the comfort of our home and thank everyone from the bottom of our hearts for all the continued prayers you all have sent Luke’s way. He truly is a testament that God’s work prevails!!

 

We’ll be writing more soon!!

DAY 176 [5.75 MONTH] – 2.25 MONTH ADJUSTED AGE UPDATE

 

Since Luke has been transferred back to Walnut Creek post Surgery & MRI – he’s been going through a lot of changes! Each time I look at him, I’m just so thankful for all the wonderful prayers and blessings that have been sent his way. He’s trucking through and is so far doing great!

He was EXTUBATED [the breathing tube that was once going down his throat was pulled out] and is now on a High Flow Nasal Cannula. Currently his settings are at a flow of 6 and uses between 35-45% oxygen. Sometimes it’s hard to get a good reading on his o2 sats because he tends to move alot and sometimes it doesn’t pick up well. This is a HUGE improvement for Luke because a few weeks ago, he was requiring a much more significant amount of oxygen on the ventilator.

Feeding wise, his new GTube is healing. He was on 24ml/hr continuous feeds. Now, they’re trying out to see if he can tolerate bolus feeds. He’s not on complete bolus yet – but he’s working on it. Right now, he’ll ‘eat’ for 2 hours, then would rest for 1 hour around the clock. The goal is to get him to about 45minutes-1hr feeds.

It’s been a while since I sat down to listen in to the shift change reports and I’m really glad to see his medication list has gone down quite alot. The last time I spoke with his doctor, he told us they’re working on weaning him off a lot of medicines Luke’s had since he was a new born. Little by little!

Luke’s alert and awake more. He loves to play with his toys that hang from his isolette. We’ll be trying to see if he can start sucking. Right now, he just tends to bite. . . hard.

It doesn’t seem a lot but these changes are really amazing! It’s what we’ve been praying for and continue to pray he just goes up hill from here.

DAY 171 – 2 MONTHS ADJUSTED UPDATE

 

Time for a quick update!!

Luke’s recovered from his surgery and was well enough to go back to his ‘home’ NICU in Walnut Creek. The staff at Oakland has been wonderful – but having Luke closer to home is something we look forward to.

Today was very eventful. We quietly celebrated his 2 month adjusted birthday. He was due on June 06, 2012 – and he would have been 2 months if he stayed long enough to bake.

In preparation for his MRI, they started another IV line and discontinued feedings at midnight last night. He was transported via ambulance to the MRI clinic next door. He did well during his MRI – he didn’t need anesthesia! That’s great for us to hear, because Luke gets pretty active when he’s awake. After his MRI – he was transported back to his home NICU in Walnut Creek.

He’s on very minimal vent settings. They’re the lowest they’ve been in a long time. Considering he just went thru surgery – I’m so happy to hear he’s not in that much distress and was able to wean off the vent even more. Last night’s setting were : 21% oxygen [room air] Vent was set at 18/6 at a rate of 20bpm. We’re hoping they would consider extubating soon. Pulmonary Hypertension is out of the picture now [crossing fingers]. His PH caused distress during his last extubation. I think he’s ready. He’s pulling at his ET tube every chance he gets! He moves like the tube isn’t there – he’d turn his head and reposition himself :)

Feeding wise – he’s on continous feedings at 24mls/hr, fortified with 22calories  [a 2ml increase since he had surgery] and is tolerating his feedings very well. He’s not eating anything thru a bottle. Everythings going through his feeding tube that was placed last week. He did have to temporarily stop feeds for the MRI and transport but I’m sure he’ll be back by tomorrow.

His current stats:

  • Weight : 8lbs 0oz – he did loose some weight the past few days after recovering from surgery but he’s gained it right back.
  • Length : 20.5 inches – I haven’t gotten a hold of his past measurements in a while – but with him being readmitted – we were there when they measured him! He’s grown 9 inches since he was born.

Extra picture :) This was taken when I was giving him a pep talk. I know he understands me when I tell him he’s so brave, so strong & so wonderful. It’s so great to see him study my face and recognize when I talk to him – and I tell him everything. I constantly remind him that GOD is watching over him and there are so many people praying for him and that we’re thankful for every minute he’s here to live his story.

Today is Surgery Day

 

This picture was taken earlier today before Luke was rolled down to the ER. The plan is to do a bronchoscopy to determine if he needs a tracheostomy. They’ll work in his G Tube [button] feeding tube into his stomach and performing another procedure called a nissen fundoplication – where part of Luke’s stomach is wrapped around the esophagus to prevent refulx.

Will post again as soon as we get more news and pictures.

 

Thank you for all your prayers!

162 Days – 8.5 Weeks Adjusted Age UPDATE

 

 

 

Hi everyone! I apologize for the lack of posts lately. As busy as we’ve been, I continue to thank God for all those who are keeping Luke in their thoughts and prayers. I’ve always believed that without the power of prayer – Luke wouldn’t be here with us. 

 

The past month has been really tough – but we would never loose hope on Luke. I’m planning on writing a detailed update on his current status & the series of events these past few weeks.

 

For starters :

  • Luke left his isolette & saw [some] sunlight! It was an epic moment. Luke hasn’t crossed his “cube” since he was born. He took a ride with his medical transport team and off to Oakland he went. We followed the ambulance that took him there & will posts some pictures of those soon. It’s a little bittersweet to leave Kaiser Walnut Creek – but the plan is for him to come back and recover there. We miss his doctors and nurses already! He tolerated the transport well.. He slept the whole time. The picture above was taken right after he was admitted in Oakland. He was so alert and looking at the pretty view from his room.
  • Luke’s been transferred from Kaiser Walnut Creek to Kaiser Oakland for his upcoming surgery. They’ve requested most specialists to asses Luke before proceeding with the surgery – and ultimately helping device a plan for his future. So far, we’ve met with the Gastroenterologist [a digestive track doctor]. I know he’s had a few more specialists come visit soon after he was transferred too. His surgery is tentatively scheduled for Wednesday.
  • HE IS NOW A MEMBER OF THE 8 POUNDER CLUB! Yay for chubbs!!! 

The change for us is okay. It’s about a 20-30 minute drive from home, so we try to schedule accordingly and we try to be there as much as we can. I know the nurses do their best job – but we know Luke best. It was funny when we tried to give his nurse a story of what he likes/doesn’t like –  - and we didn’t know how long the list was! He’s a very particular little kid. :)

Today, Luke loved to show off his long eyelashes and the smiles and giggles today. It’s great to see him happy that way. . it reassures us that he’s okay. I wish I captured those smiles – he was such a goof ball!

 

I know there are lots of people awaiting for news & updates and I’ve challenged myself to post things on a daily basis [again] – especially now that there’s going to be a lot of changes. Having this website helps remind me of what Luke and our family has gone thru these past 5 months in the NICU. I hope someday it would help a NICU mom in need of some inspiration too.

 

If you would like to follow us on instagram where we try to capture real time moments [until I figure out how to link instagram to wordpress] Please feel free to follow us!

Michelle : @mikailani

Neill : @ne0_BSP

MY FIRST FATHER’S DAY

MY FIRST FATHER'S DAY MY FIRST FATHER’S DAY

While Daddy & Kailani sleep and I stay wide awake gave me the perfect opportunity to write a nice little post. I’m working on an update & will post that tomorrow as soon as I know what this weeks plans are.

I know that spending father’s day in the NICU is hard. I felt that way on Mother’s day. Luke’s been pretty stable – but he did have a few Brady Bunches aka Cluster Brady’s. That didn’t stop him from playing with daddy & lifting up his head [His new trick]

24 WEEK PREEMIE - 2 WEEKS CORRECTED LIFTING HEAD

His nurses did such a good job making a scrapbook for Neill. All complete with his footprint! Amazing how big his feet grew!

. . . and Father’s day isn’t complete without a picture with the kids!!

FATHERS DAY IN THE NICU FATHERS DAY IN THE NICU

MILESTONE : AN OPEN CRIB!

Reaching milestones are the most celebrated things in the NICU [other than giving birth ;) ] I remember doing the happy dance when Luke finally reached 2 pounds. On Friday – I was so happy to see his isolette lid open & found him swaddled in blankets! I’ve never seen him swaddled before!

It’s been 2 days since he graduated to an open crib and so far, so good! I think the nurses are a lot happier because when he’s swaddled – he can’t mess around with his neo bar and his ET tube haha!

 

That’s an updated picture of his man cave. It’s great not having the need to put our hands through the isolette doors now! It’s Giants season now – so we switched out his 49ers blanket to his black and orange.

In other news – Luke was weighed last night and he came in at 3 pounds, 15.1 ounces. Just 0.9 ounces shy from joining the 4 pounder club! Go Luke!!!

DAY 72 – 35 WEEK 2 DAY GESTATION UPDATE

Hi Everyone! Here’s a summary of what’s happened since the last update.

Shortly after I posted the last update, Luke was re-intubated. We were told it was because of exhaustion. It probably could have been his 2 month immunization shots too. He’s been intubated since and other than being on the vent, there hasn’t been many changes.

To sum up the past few weeks, Luke’s progress has been slow but steady. It’s now normal for my conversations with doctors to be ‘Hi . . . Do you have any questions? and Bye’ because other than his love/hate relationship with the vent, there hasn’t been anything exciting to talk about – and sometimes, that’s what I need to hear. The goal is of course to get him off that vent. Once he’s off the vent – we can move to bigger and better things.

After that scare we had last month, we were concerned about Luke’s activity. Boy, has that changed!! Luke’s been active, awake & naughty. He definitely made up for the lost time he had when he wasn’t feeling well. He’s been awake for longer periods and always has his eyes wide open [like the photo above], contorting his body, kicking, pulling, stretching. . all of the above. In fact, he’s been so active . . . HE EXTUBATED HIMSELF on April 30He pulled the tube that connects him to his vent. I heard it was possible, but I didn’t think that Luke could/would do it – but that’s our Luke. Feisty. He was given a chance to see if he can go on CPAP again, but the timing just wasn’t right. They’re talking about extubation again – but we’ll see. I just hope that all the stars are aligned and we can finally say goodbye to that machine I’ve grown so used to.

Doesn’t he look so much Chunkier? That’s because he’s grown SOOO Much!! Here are his current stats as of 11:30pm 05/02/12

Weight : 3lbs 11oz [2lbs 6oz gained since birth] He’s almost going to join the 4 pounder club!! 

 Length : 14.5 inches [3 inches longer since birth]